I present the report of the Community Affairs References Committee on epilepsy, together with accompanying documents and move:

That the Senate take note of the report.

Epilepsy is more than just seizures. That was what we heard as a committee at our first hearing into epilepsy, here in Canberra. Over the course of this inquiry, through the generosity and bravery of those people who are living with epilepsy, their families and those people who have lost loved ones to epilepsy, the committee heard loudly and clearly that epilepsy is indeed much more than seizures.

I had no idea that 30 per cent of people in this country who get an epilepsy diagnosis have what's called drug-resistant epilepsy. For those people, their lives and the lives of their families are turned upside down. We heard testimony from parents of young children and young adults and, in some cases, adult children with drug-resistant epilepsy who feel like they are on high alert 24/7, day after day, week after week, year after year, looking out for and caring for their loved ones, hearing bumps in the night and wondering if their child has had a seizure, worrying whether their young child is going to be injured from a seizure. We heard moving stories from families who have lost loved ones to epilepsy.

SUDEP—the first time I heard that term was during this inquiry—stands for sudden unexpected death from epilepsy, and people with drug-resistant epilepsy have a 17 per cent risk of dying suddenly from epilepsy. Tragically, many, many parents and people living with epilepsy are not told that when they get their diagnosis. For some, the first time they hear about SUDEP is when they are burying their child or their loved one. Those families told us loudly and clearly that they want SUDEP to be part of the discussions when an epilepsy diagnosis is made. They want families and people living with epilepsy to understand clearly what SUDEP is, what the risks are and how it can be minimised.

For those people who have epilepsy that can't be controlled, their lives are turned upside down. When you get an epilepsy diagnosis, you lose your driver's licence, but not only can you not drive yourself around, we heard evidence from people living with epilepsy that taking public transport is out of the question for many people. The danger of having a seizure on public transport is too big a risk. We heard from people who'd been thrown out of taxis or Ubers because they were having a seizure, and the person driving the car didn't understand what was going on. They thought they were drunk or on drugs. People with drug-resistant epilepsy, in many instances, can't work. They can't drive. Yet, for many, because their conditions are episodic or fluctuate—they go up and down over time—they're not eligible for the National Disability Insurance Scheme. It's families, partners and loved ones who are the ones doing the majority of the caring for those people.

We heard in our inquiry that there are no optimal care pathways for epilepsy and that epilepsy care and diagnosis around the country is fragmented. For most people, it's a postcode lottery. We heard from a young family in Tasmania whose daughter was having 30 seizures a day and yet being sent home because the seizures weren't long enough to meet the threshold for more tests to be done. We heard stories of young First Nations people in the Territory either being removed from or having to leave their families on country because there's no support there once they get an epilepsy diagnosis. Yet First Nations people are overrepresented when it comes to diagnoses of epilepsy.

We also heard things in our inquiry that give us hope and are a good story. We went to see the Murdoch Children's Research Institute in Melbourne and speak to Professor Howell and the others who work there, who are leading the world in gene therapy for epilepsy and who are also leading the world in rapid gene testing for epilepsy. We heard the story of a young family with a young daughter who was diagnosed within months of being born, and that has fundamentally changed the trajectory of their daughter's life, because an early diagnosis for a baby or a young child with epilepsy—if it can be controlled—changes their life trajectory. Continual seizures on a young brain affect that young person's development, and many young people with severe uncontrolled epilepsy end up with many comorbidities or other medical conditions that affect their life trajectory. So making rapid gene testing available to people very early on in their diagnosis is incredibly important.

We heard, too, that, despite Australian researchers making massive strides in epilepsy research, some funding is not guaranteed and some funding is being reduced. Australia is a world leader when it comes to epilepsy research, and one of the recommendations of the committee is that we continue to invest in that research so that we can continue to lead the world and provide the breakthroughs that we need for people who are living with this condition.

I want to offer my thanks to Senator Wendy Askew, who was the instigator of this inquiry. Senator Askew played a key role right up until she left the Senate, going around the country with us, hearing the evidence and contributing to what will be our final report. I also want to give thanks to Senator Ananda-Rajah, who also has a deep interest in this inquiry and who, with her medical background, was able to add to the quality of the questions that we were able to put to the medical experts who came before the inquiry in particular. I want to thank the secretariat because the work that they have done in assisting us to bring this report into the chamber has given voice to so many people who came and gave evidence at our inquiry. We had hundreds of submissions. We had numerous lived experience panels right across the country, and every single one of those people has been given voice in this report.

I want to encourage the government to take on the 27 recommendations in this report. It starts with the need for an education campaign in this country. Certainly, one of the things that I learnt as I chaired this inquiry and listened to the evidence of witness after witness is that we as a community have very little knowledge about epilepsy. Yet it's one of the most common brain conditions experienced by people in this country. We need teachers, we need nurses, we need GPS, we need taxi drivers, we need Uber drivers, we need other people who are in the community to understand what epilepsy is, to not be afraid of it when they see someone experiencing a seizure and to understand that there are multiple ways that people can have seizures—they don't all look the same. We need to find ways to support those people who are living with an epilepsy diagnosis, particularly those with drug-resistant epilepsy, who desperately need more care and support.

I want to say a personal thank you to every person living with epilepsy, to every family member of someone living with epilepsy and to every family member of a loved one who died from epilepsy. Thank you for your courage and your bravery, and I hope that this report does your evidence justice.

I rise to speak on the epilepsy report tabled by the Community Affairs References Committee, and I pay tribute to Senator Allman-Payne for her sensitive, professional chairing of this committee and for all her work and her leadership on this committee. I also pay tribute to recently retired Senator Askew, a coalition Senator who has served her community in Tasmania with distinction. This legacy is very much her brainchild. This was by far one of the most meaningful pieces of work I have had the privilege of participating in in the short time I've been in the Senate, and I don't say that lightly. I practised for a very long time, and I have never seen a health condition with such weak infrastructure. It's actually in some perverse way better to have a diagnosis of diabetes, better to have a diagnosis even of cancer, better to even have a diagnosis of substance abuse, which is the most stigmatised condition in medicine by far, in 2026 than to have a diagnosis, in some parts of this country, of epilepsy, and that is an indictment on us all.

However, we are here to do good. Epilepsy affects around 250,000 Australians. It has a bimodal incidence, which means it has two bumps in the lifespan—one in childhood and the other in older Australians. The aetiology, the causes, are very different in both cohorts. In older Australians it tends to be associated with vascular insults like stroke, for example, or acquired brain injury. But I want to really focus on the younger cohort. It can manifest from infancy, within weeks of being born, early childhood, the middle years, adolescence or early adulthood, and the causes of early onset epilepsy are very different. It is often really driven by genetic causes, genetic factors. One in 600 babies born in Australia are born with epilepsy. It's a staggering number. These genetic epilepsies are diverse. It is a mixed bag. There are around 950 genetic epilepsies and counting.

I have to ask myself. Why is it that babies are born with genetic epilepsy or indeed with any genetic problem in this country, when you have two parents who are completely normal and healthy? I'm going to cross-reference and speculate here. In another committee that we worked on, which was the microplastics and nanoplastics committee, we heard testimony in that committee that microplastics and nanoplastics cross the placenta in an act of toxic trespass. That's what the Minderoo expert told us, Dr Dunlop. I have to wonder whether there's a connection here between these two, where the environment is now driving genetic conditions amongst our babies. I don't know, and certainly this wasn't declared in the hearing, but I have to ask the question.

But, back to epilepsy, your outcome is very much dependent on postcode and, frankly, how much you have in your bank account. When we talk about health inequity, this is the poster child of health inequity. Senator Allman-Payne is absolutely dead right here. We had testimony of people having outstanding care, principally in Victoria, thanks to the presence of centres of excellence and comprehensive epilepsy centres like the Alfred, like Austin Health and like the Royal Children's Hospital, which is associated with MCRI, the Murdoch Children's Research Institute. But it's kind of a lottery if you're anywhere else in this country. If you're in South Australia, for example, there is a 900-day wait to see an epilepsy clinic if you're an adult. That's three years. Who's going to wait three years? It's unacceptable. What has happened is that this weakening or absence, actually, of public services has driven patients into private neurologists. That is not without consequence because it is associated with out-of-pocket costs of $400 or $500 a visit, and it can take a couple of years to stabilise on seizure medications.

The most important thing is to stabilise it, to achieve seizure freedom, and it is incredibly important when you are talking about a growing brain. The naught to five years is a critical period of brain development. That is when the brain is growing fastest in life. That window is when 90 per cent of your growth in our brains happens. That is why we call that them the critical years. So imagine, if we are not achieving seizure freedom in that period of time, what that is doing developmentally to that child.

In addition, there is this trial and error of cycling through something like 17 to 20 anti-epileptic drugs without any real roadmap or guideline because you don't have access to genetic testing, which is the case for the vast majority of Australians. This can lead to drug resistant epilepsy, which affects one in three patients. Drug resistant epilepsy is a catastrophe for those patients because it means they don't achieve seizure freedom. They are piling on side effects plus cost inconvenience. It is an absolute handbrake on their lives. They are unable to work. They are unable to drive. If you have a seizure, your licence is cancelled for six months. Imagine that happening in the prime of your life. We had so much testimony from young people who want to participate, who want to work and who want to study but are unable to do so because their licence has been revoked. It is imperative that patients achieve seizure freedom.

I'm only going to pull a couple of recommendations from our report. There are a lot of recommendations, but one is that we clearly need a national epilepsy strategy because that is the roadmap and that is going to bring all the groups together. We've done this before with cancer. We have an Australian Cancer Plan. It is outstanding, and we are implementing it. We need the same thing with epilepsy.

The second recommendation I want to highlight is that we need to establish comprehensive epilepsy centres in as many places in this country as possible, ideally in every state and territory. But the linchpin, particularly, has to be South Australia, because South Australia is an anchor and a referral centre for the Northern Territory. It draws in patients from the Northern Territory. We saw a glimmer of hope there. We met a trio of clinicians, two doctors who are training to become epileptologists as well as a neurosurgeon who has trained in neurosurgical epilepsy. They are planning on setting up a comprehensive epilepsy service in South Australia. We need to support them.

It is imperative that South Australia sees an uplift because it will then transform the lives not only of people in South Australia but also Central Australia and Northern Australia. We heard heartbreaking testimony that Indigenous families are being separated in the Northern Territory. Children are being sent to supported care because they are having seizures and they need supervision with taking their medicines. We heard of elders going 400 or 500 kilometres from their country to live in residential care because they need supervision to take their medicines and there are concerns that they're not going to get access to care. This feels like the stolen generation all over again. This is unacceptable.

We also need to ensure that these comprehensive epilepsy centres have access to high-fidelity imaging. Free Tesla MRI scanning is the benchmark at the moment, but we need to go further. A truly comprehensive epilepsy centre will also offer the kind of imaging which you don't get anywhere else. Called stereo EEG, it is where implants are put into the brain to localise where the misfire is occurring, and then they ablate it—they wipe it out. It can cure epilepsy. For some patients, there is absolutely an opportunity to cure epilepsy and to live a normal life, and we heard testimony to that effect.

I thank all the many parents, carers and children. I thank my colleagues and I thank the secretary— (Time expired)

I seek leave to continue my remarks.

Leave granted; debate adjourned.